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Learning to Swim in The Alphabet Soup of the DSM

Monthly Archives: July 2013

I can’t believe how long it’s been since I posted here. It’s the endless summer days, I think. Some sort of time warp has been created, and there are moments I don’t even know the day, date, or month!

Well, skills training is finally underway. That required some sort of miracle. The county is actually paying for this service, and I’m eternally grateful for that. It would be so costly otherwise, but the downside to receiving county services is dealing with the county. They move at a snail’s pace, and I think they’ve created their own dialect over there that only a few people speak and understand. I would get frustrated over the many weird misunderstandings that have occurred between me, the counseling agency providing the skills training, and the county, but there is no point. Weird paperwork mishaps always happen when dealing with government agencies.

So, what is skills training? Well, I’m still trying to figure that out. It’s taken almost a month to come up with a treatment plan for Grace. I know that there are other children and teens in the world with schizophrenia spectrum disorders, but there aren’t many. This hits home every time I sit with a clinician and discuss strategies for effective treatment. They all sit back, look mystified for a minute or two, and inevitably say, “What do you think?” I used to say, “Isn’t that your job?” A year into our new reality, I see that I know more about Grace than the clinicians, and most clinicians don’t have a ton of training on schizophrenia spectrum disorders. I’ve spent a year reading scholarly articles and research documents regarding schizoaffective disorder. At this point, I can bring something to the table when it comes to discussing what Grace needs. Collaboration is a beautiful thing.

So, what might a child like Grace need in terms of skills training?

Executive functioning is a huge problem for kids with bipolar disorder and schizophrenia spectrum disorders. In fact, it’s possible to trace part of their anxiety back to deficits in executive function and working memory. Treatment plans often read like IEPs in that the language is written like: “Grace will learn one to two new coping skills a week to increase her self-soothing and coping.” If a child has poor working memory, however, how will they learn one to two new coping skills in one week? This applies to children with ADHD as well because executive function and working memory are often a problem for that cohort, too. Helping clinicians understand that schizophrenia spectrum disorders are neuropsychiatric in nature wherein white matter might be decreasing is important because the point of skills training is to increase functioning in the context of ongoing loss of function. Simply knowing this key bit of information has made a huge difference in how Grace’s treatment plan has been written and implemented.

Social skills training is also a part of Grace’s treatment plan. I have observed some losses in this area, and I’m not sure if it’s due to cognitive impairments caused by her disorder or the issue of Grace now having a “new normal”. Perhaps it’s a combination of both. When girls get together to talk about bad days, what do you suppose a pre-teen girl will discuss? Well, Grace is wont to discuss the days when she hallucinates and hears things. That’s her definition of a bad day. This deviates from the norm for almost everyone in her social circle. Knowing what to discuss, when to discuss it, and with whom is all part of having good social skills as well as psychological flexibility. Psychological flexibility is the idea that we can contain our affect to match the social setting. For example, if I just found out that my boyfriend was cheating on me but I was still at work and heading into a meeting with the CEO of the company, would it be appropriate to display exactly how I felt about my boyfriend and his unfaithfulness in that moment? No. I would need to contain my affect and text a girlfriend something like this: “John is a cheating bastard. Meet me for drinks posthaste at The Dirty Sanchez!” I would then go into the meeting appearing professional and ready to discuss whatever is on the agenda.

I think that under the header of social skills training is the issue of affect congruence. This addresses the issue that many people with schizophrenia spectrum disorders have. Their affect does not match their inner state of mind. They often appear flat and drawn. This has become true for Grace. The goal here is that her outer affect should match how she feels. If she is sad, then she should look sad. If she is feeling contempt, then she ought to look contemptuous. If she is happy, then she should look happy. Keep in mind, affect congruence is something that also affects people with Axis II diagnoses. The same could be said for affect containment. This is why it can be difficult to get a proper diagnosis. In the beginning, one might leave a clinician’s office with an Axis II diagnosis rather than an Axis I diagnosis.

There is also a goal on Grace’s treatment plan that addresses organization and task completion, but this relates to executive function and working memory. It starts to become very clear just where the deficits lie when one breaks down the skills and what needs to be addressed. Grace can’t be given a task with more than two steps. She won’t remember the third step. This is due to deficits in her working memory. People with ADHD often have similar issues. Grace only has 3% available working memory which is stunning. So, part of the skills training is to help grow new neural pathways to compensate for such low working memory.

The beauty of this kind of skills training is that a clinician comes into our home twice a week and works with Grace. She’s very kind, and Grace likes her. Her name is Kim. Kim’s supervisor performed the diagnostic assessment (DA) for Grace, and she was in our home the day after Eadaoin decided to try cutting for the first time. She made strong recommendations for coming back and doing a DA for Eadaoin, and Eadaoin is now getting in-home therapy sessions twice a week as well. Eadaoin’s psychiatrist said that her cutting wasn’t self-destructive. Because Eadaoin was also pulling out her hair at the same time (Trichotillomania), she indicated that both these behaviors were serotonin driven. She increased her Zoloft (sertraline) to 100 mg. Eadaoin is also taking 200 mg of Lamictal in an effort to control her cyclothymia. As soon as the Zoloft was increased, Eadaoin was up all night and very energetic and elevated in her mood. Some parents might find this alarming, but, compared to Grace, this just seems like par for the course.

Eadaoin does not like the in-home sessions. She thinks they are weird. I don’t blame her. Does anyone really like therapy? It’s sort of like looking forward to a pelvic exam–“Oh, I just can’t wait to feel the scraping sensation of the Pap smear!” No, no one loves to go to therapy. Eadaoin, however, doesn’t get to carve a smiley face into her thigh and pull her hair out in front of me with no natural consequences. She gets to go to psychotherapy and get educated on what it means to have a mood disorder and how to live with one. It’s not punishment. It’s education and being equipped. Milly seems to feel slighted by all this in-home therapy. She exclaimed a few weeks ago, “I need someone to talk to. Where’s my therapist?” Where’s my therapist indeed.

Here is the most interesting observation to report. Grace is medicated to the upper levels of all of her medications. There is nowhere left to go, and in June she was still hallucinating and paranoid. She was still highly labile. I didn’t know what to do. Then, I came across some studies that linked sugar consumption to a rise in depression and schizophrenia (Dietary Sugar and Mental Illness). We are already gluten-free, but Grace has a terrible sweet tooth. She spends almost all her money on candy specifically Skittles. I think she has a secret stash somewhere. I told her that she was to go sugar-free for two weeks. No sugar. I replaced all sugar in my house with organic cane sugar because at least cane sugar has retained some amino acids and minerals. We don’t drink soda in our house–EVER, and I have always avoided high-fructose corn syrup (HFCS). Grace agreed to the sugar moratorium. Much to my elated surprise, Grace improved. She was the most stable that she’s ever been. She stopped hallucinating. Her mood lability improved. She was as close to her “old self” as I’ve seen her in over a year. It was amazing. We challenged this, and she ate some Skittles. The next day she was moody, crying, frustrated, and hallucinating. Clearly, there is a link between sugar consumption and mental illness. I’m shocked.

This summer is proving to be interesting. I should probably give up sugar, too, in light of this new information. How on earth will I drink coffee with no sugar? It’s so damn bitter.

Summer. It’s really here. I am no longer a mother. I am The Entertainer. I feel like Julie the Cruise Director from “The Love Boat” existing only to make everyone’s day fabulous and full of fun and frivolity.

I exist only to entertain you! Here is a list of your daily activities and fun times…

Milly is an early riser, and, if Grace is manic, then she is as well. The moment that they hear me stirring as in going into the bathroom to brush my teeth, they hunt me down–“So Mom….” That’s how these two always begin their grand declarations. I usually start to feel panic, and my stock response is, “Girls, I have toothpaste in my mouth, and I don’t have a cup of coffee in my hand yet. Unless someone is bleeding from an orifice or trapped under something heavy, you will not barrage me with your brainstorms yet.” Someone usually says, “Aaaw man!” while another sighs and “kicks the dirt”. Then there is giggling and whispering. I look at them suspiciously while they huddle up and gesticulate like they’re trying to land a plane. Once I am holding my steaming cup of coffee, one member of the Gruesome Twosome finds me and silkily says, “So Mom, now that you have your coffee….” I immediately put my hand up to interrupt. “I have to drink it now.” That answer renders a sly, plotting expression from one of my daughters and a loud yell, “She’s still drinking her coffee!” Somewhere in the distance I hear a frustrated, “Ugh!”

This is the only moment in the day where I am allowed to just sit peacefully. Sort of. It seems that every member of my family has come equipped with radar. I don’t know if they purchased it on the black market. I don’t know if this radar secretly comes in toys. I don’t know if mothers have been blacklisted from using it or finding its operational instructions so that we might dismantle it, but I know that this radar exists with the same certainty that I know sock ninjas do (It’s the only explanation as to why I currently have 16 unmatched socks, and it’s driving me crazy. Also, this video offers up proof of the existence of sock ninjas)!

What is this radar? Simply put, every time I sit down or even have a moment alone, my children sense it and seek me out. They are utterly possessed by a compulsion to put a stop to my sitting, contemplating, relaxing, or even conversing with anyone other than them. I have taken a survey of other mothers and found that this is a real phenomenon. The longest we are allowed to sit seems to be 60 seconds before a child appears with a “need”. This does include the bathroom–one does sit in the bathroom after all. The shower and bath are also a part of this radar because you are generally alone when you bathe, and you are never allowed to be alone. Last week, I refereed an argument while taking a shower. I actually heard myself yelling out, “Can we be done with this now? Can you two be civil now? You interrupted my special naked time!” Referring to your time in the shower as “special naked time” will most certainly prevent any child from ever bothering you in the shower again. I have learned this. It seems that embarrassment is kryptonite to their radar.

Talking on the phone is a particular problem because, for some reason, young children do not like their mothers to talk to anyone other than them. You will find that young children will come up with the oddest of reasons to interrupt your phone calls. The standard excuse around here for everything is: “My ears are dirty.” Doireann implemented that excuse when she was 2 years-old, and I’m convinced that she held a secret meeting with her siblings some time ago in order to coach them on using different strategies from The Radar Playbook. Subsequently, all of them have used the Dirty Ears excuse for years.

There seems to be a chapter in The Radar Playbook entirely devoted to all male-female interactions. How many times have I tried to have a meaningful conversation with my husband only to be interrupted by one of my kids? I swear that they are doing it on purpose. I can’t finish a thought without one of them finding us, offering up some flimsy reason for the interruption–“So Dad, have you ever noticed that the days get longer in the summer?” or “So Mom, have you ever watched paint dry?”, and our forgetting about what we were even talking about. They stand there staring at us, looking positively goofy, while we stare back looking disgruntled. “What?” they innocently ask before ambling off. Forget about sexy rumpus. Every time you think you might be able to create a mood that could lead to something later a child kills the buzz by rushing into the moment–“Hey guys! I just made my Flarp! fart out the weirdest sound, but Doireann is mad at me because she thinks it’s annoying and loud and Eadaoin told me to stop annoying everyone and Grace wants to use it but I don’t want to share it because it’s mine and that’s not fair because I can use my Flarp! any way I want to because it’s mine and they can leave the room if they don’t wanna hear my Flarp! fart. That’s fair. Oh, and Grace is seeing things again.” I think it’s a clever ruse concocted by my children to prevent adult fun. They were really just high-fiving each other afterwards because, once again, they had foiled our plans.

Why is it so important that any and all of our plans be interrupted? Why is it even more important that mothers never sit down, relax, or spend time alone? Distraction. Think about the truly clever nature of this plot. What sorts of requests do children make when you’re distracted?

“So Mom, can I have a sleepover tonight?”

“So Mom, can I finger paint now?”

“So Mom, can I play with the permanent markers?”

“So Mom, I wanna try to make cupcakes all by myself. Can I?”

“So Mom, I know I haven’t done my chores, but my friend just called for a playdate. Can I still go?”

“So Mom, can I borrow $20?”

“So Mom, can I skip dinner and eat dessert?”

The requests always seem to walk the line, don’t they? When you’re distracted coupled with tired from never sitting, you’re an easily swindled parent. You’re not thinking clearly. You’re multitasking and parallel processing on too many levels so you find yourself saying ‘yes’ to anything. When you finally get a moment to yourself, you then realize what you’ve done, and your child has one very solid defense–“But Mom, you said I could!” It’s bloody brilliant.

This is why I guard my Morning Coffee Time with such vigor and commitment. I have time to meditate and get my head on straight for the day before me. I watch my daughters plot and plan what they hope their day will be like while I prepare myself for the onslaught. They will activate their radar, pull strategies from the playbook, and I will put up my shields. There will be numerous requests to be sure. They will bombard me from the moment I wake up so that by the time the afternoon arrives I am vulnerable to the blitzkrieg. What will it be? Three sleepovers at once? A new app? A half sleepover with a trip to Coldstone Creamery thrown in? Bubble tea in Uptown? Or, bubble tea in Uptown and a sleepover combined with snacks and a new app? The last request was a pool in the backyard. Yep. They wanted a pool. As if. Then someone wanted purple hair. And…and…and…

This is what I know for sure. My cats are lazy because they haven’t found and killed those sock ninjas, and I need to find where my kids are hiding their copy of The Radar Playbook and burn it. I’d really like to sit down for longer than 60 seconds, and I’d like to take a shower without being interrupted…and talk on the phone…and talk to my husband…and…